1. < Osteoporosis & Bone Health

Younger than usual with severe osteoporosis

Posted by hopefullibrarian @hopefullibrarian, Sep 25, 2023

Looking for others with severe osteoporosis at a "youngish" age, for mutual support. I am 53 with severe osteoporosis---t-scores: lumbar -3.7, and femoral neck -3.2. I had a vertebral compression fracture at age 50, but wasn't given a DEXA scan until 2 years later.

Like so many, I did everything right in my adult life--exercise, healthy diet, supplements. It's at least, in part genetic, and partly because I am very petite and thin. My mother is almost 80, was diagnosed with osteoporosis in her 50s, but even now, without any treatment, her t-scores are not as bad as mine.

In May, I had my first Prolia injection. My insurance denied coverage for Evenity. No other options were given to me. The advice I received was, "Don't worry, take suppliments, keep exercising, and don't fall."

I am hopeful, while being realistic. I'm looking to connect with others who understand.

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

hopefullibrarian | @hopefullibrarian | May 12 11:02am
In reply to @rola "Hi @hopefullibrarian. I wanted to say a few things yesterday, and oops, it all got wiped..." + (show)
@rola

Hi @hopefullibrarian. I wanted to say a few things yesterday, and oops, it all got wiped out😳! I gave up for the evening. Please read the threads in here on osteoporosis. Don't just go by the headings bc there are nuggets in every conversation that are useful. Drs, insurance companies, even pharmacies will try and dictate what's best for your young life. They do not always get it right. Yet there are some in the medical field, that have invested their heart & soul into learning abt this disease, and might just take a different approach to Prolia at such a young age. I would recommend Dr Keith McCormick's new book, "Great Bones." Be sure to go right to his chapter on medications, it's not too late. He talks abt sequential therapy as one of the most important things. Also, specific testing is very important before, during, and after.

My experience was similar to yours with my long awaited physician. I was handed a list of meds, told to read abt them, increase calcium, exercise, and see you next year! Very difficult to get best care on this disease. It' s way to important to not discuss the short- and long-term objectives of suggested treatments. Dr McCormick is well aware insurance companies will deny you an anabolic first, he says, "fight for what's best for YOU!"

Just passing on a little of what I've learned and Wishing you the Best.❤️

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Hi @rola, I've been wanting to circle back here and thank you for this comment that you made to my first post. It was the day after I joined this support group, and it opened my eyes and gave me true hope at a time when I was desperate to find some. Thank you!

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1 reply
hopefullibrarian | @hopefullibrarian | May 12 11:25am
In reply to @gigi4 "I'm in my 70's, osteopenia and osteoporosis diagnosed a few years ago. And I too am..." + (show)
@gigi4

I'm in my 70's, osteopenia and osteoporosis diagnosed a few years ago. And I too am short and petite! I choose not to use the drugs and instead have used Algaecal (not with Strontium) as it is calcium that comes from a food source, vitamin D3, Ultra K2-7 + D3, Living Bone and Bone & Marrow - 2 supplements from Ancestral Supplements, use ankle weights for some exercises, walk, play tennis and stand as much as I can instead of sitting. My last Dexa in 12/23 showed no significant increases - I stayed were I was a year ago and I consider that a win. I will continue with what I'm doing until I have another Dexa. At this point with all my supplements there is no way of knowing which is helping and which isn't worth it. So it's costly but at this point, my goal is stay active.
Best to all of you!

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Hi @gigi4, You're not losing more density by using natural methods? That *is* a win. I'm so inspired when I hear stories like yours.
Right now, I'm on Evenity, and simultaneously doing everything natural that I can fit into my day, and my budget. Like you, I'll probably never know which natural approaches are working and which aren't. I'm using meds to get me out of the hole. If I can get into the osteopenia range, I'll try to get off of the meds while continuing to do everything natural. I'll literally jump for joy if I ever get my BMD to a level where doing so won't break a bone. 🙂

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elisabeth007 | @elisabeth007 | May 12 12:03pm
In reply to @hopefullibrarian "Hi @elisabeth007, My prior auth that was denied was submitted by my Orthopedic surgeon at a..." + (show)
@hopefullibrarian

Hi @elisabeth007, My prior auth that was denied was submitted by my Orthopedic surgeon at a rural clinic. Now I'm also consulting an Endocrinologist at a huge university clinic. She told me not to worry if my treatment gets denied on the first try, because all she would need to do is call them and sort it out.

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im so glad to hear you now have endo in a major setting and that she is willing to advocate on your behalf w ins company

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healthmatters | @healthmatters | May 13 7:06am

I'm sharing this information in case it can help anyone. Wish I had known all of this 10 years ago.

This month I was just diagnosed with osteoporosis. DEXA showed -2.8 and _2.9 on left and right hip, respectively. Am in mid 60s

I do have one question. I have Premarin available to me so I have started using a dose of one gram 3 times a week. I did see something about that which made me think it could work for my situation, though others may have a different reason not to go that route. My question is what is everyone's experience with Premarin as far as bone density/osteoporosis and did you have an estrogen and progesterone mix instead of just one hormone like me?

And as far as medication, right now I am trying to find a dr who understands and works with Tymlos and who how to manage patients on it.

I'm also working on figuring out a good femur neck bone building exercise, but blew one knee last week doing deadlifts. I thought I was starting with weight that was comfortable for me - two 8 pound dumbbells. I had good form/straight back/slowly moving through the lift/8 reps x3, but one knee really acted up the day after. It's better after a week. So I am going to try a 10 pound waist weight and walk 30 minutes a day. I may wear the waist weight throughout the day though while doing yard and house work.

I am also doing 3 sets of 20 reps of knee banded hip abduction and glut donkey kick machine at the gym.

But about supplements: If this can help anybody....

Some of you may know about vitamin K2 being important. I have done some research about how it's involved in bone building. The simple explanation is that vitamin K2 directs calcium out of the bloodstream and to the bone.

A very good article about vitamin K2 - https://www.healthline.com/nutrition/vitamin-k2#bone-health

And from another article, quote, "Vitamin D & vitamin K2 are complimentary vitamins. While Vitamin D is necessary for absorbing calcium from food in the intestines, Vitamin K2 does two functions that help direct the calcium to the correct spot:
1) by activating Osteocalcin, a protein that promotes accumulation of calcium in bones and teeth, and
2)by decreasing accumulation of calcium in soft tissues, such as kidneys and blood vessels

Vitamin K2 is found in beef liver, egg yolk, soft cheese and fermented foods."
Source: https://www.hyperparathyroidmd.com/hyperparathyroidism-vitamin-d/

I get K2 from supplements and natto too. Natto is a fermented soybean product found in some Asian food stores.

I freeze my natto since I use only 2 teaspoons daily and don't want it to spoil. I also take the brand Nature Made D3 with Vitamin K2 daily and aim for 100-300 micrograms of Vitamin K2 daily. The supplement has 100mcg.

I take my vitamin D3, calcium, zinc, magnesium combo pill, four pills dosed throughout the day. I take the first pill with the vitamin K2 supplement and the third pill with 2 teaspoons of natto.

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rola | @rola | May 19 10:51pm
In reply to @hopefullibrarian "Hi @rola, I've been wanting to circle back here and thank you for this comment that..." + (show)
@hopefullibrarian

Hi @rola, I've been wanting to circle back here and thank you for this comment that you made to my first post. It was the day after I joined this support group, and it opened my eyes and gave me true hope at a time when I was desperate to find some. Thank you!

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So kind of you to say that @hopefullibrarian.
It's a wonderful place in here with such helpful & special participants. You take care now.❤️

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